AIDS AT 25

Sabin Russell, Chronicle Medical Writer

Published 4:00 am, Sunday, June 4, 2006

Photo: Lacy Atkins

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DeShawn Patton checks the weather from the window of her apartment at the Edgewurth Hotel in San Francisco's tenderloin. DeShawn Patton and boyfriend Carlos both have AIDS and live in the Edgewurth Hotel in San Francisco, MAy 4, 2006.Photo By Lacy Atkins less

DeShawn Patton checks the weather from the window of her apartment at the Edgewurth Hotel in San Francisco's tenderloin. DeShawn Patton and boyfriend Carlos both have AIDS and live in the Edgewurth Hotel in San ... more

Photo: Lacy Atkins

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Ross Woodall gets up close to the computer screen and changes the print size to large to do work as a travel agent, May 17, 2006, in San Francisco, Ca. Ross Woodall who has been living with HIV since 1981 and was told he had six months to live in 1987. He's legally blind from a viral infection, but still works as a part time travel agent.
(Lacy Atkins/The Chronicle)
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Ross Woodall gets up close to the computer screen and changes the print size to large to do work as a travel agent, May 17, 2006, in San Francisco, Ca. Ross Woodall who has been living with HIV since 1981 and ... more

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AIDS AT 25

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On June 5, 1981, Dr. Michael Gottlieb, a young immunologist at the UCLA School of Medicine, reported five cases of a rare pneumonia among gay men in Los Angeles. Each had a profoundly depressed immune system. Two were already dead.

His report in the weekly bulletin of the Centers for Disease Control was the first medical description of what would come to be known as acquired immune deficiency syndrome. It signaled the start of a global scourge that has since killed 25 million. Today, a quarter-century later, it is estimated that 38.6 million people are living with HIV, the virus that causes AIDS.

Gottlieb had no idea that he had discovered a monster. "I thought this might be bigger than Legionnaire's disease," he recalled, referring to the discovery five years earlier of a previously unknown bacterium that killed 29 attendees at an American Legion convention in Philadelphia.

Soon after Gottlieb's paper appeared, similar accounts of Pneumocystis carinii pneumonia were trickling in from gay neighborhoods in New York and San Francisco. Those new reports also described outbreaks among gay men of Kaposi's sarcoma, a rare skin cancer that caused disfiguring purple lesions.

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Amid the initial excitement of medical researchers on the trail of a new disease, no one knew that 250,000 gay men in the United States were already infected with HIV.

Twenty-five years later, the world is still playing catch-up. One million Americans are living with HIV, but 25 percent of them do not know it. Worldwide, 9 out of 10 people carrying the virus have yet to be tested, according to estimates from UNAIDS, the United Nations program on HIV/AIDS.

The hidden toll is a grim tribute to the insidious nature of the human immunodeficiency virus. A tiny package of just nine genes, HIV is a lentivirus, or slow virus, that gradually degrades the immune system, leaving the body vulnerable to fatal assaults from bacteria and other viruses. HIV can leave a person healthy for 10 years, free to spread it to others through sex or contaminated needles.

It was in San Francisco's bacchanalian gay culture of the early 1980s that the virus fully demonstrated its capacity for chaos — silently infecting close to half that community with a fatal, sexually transmitted disease.

As scientists and doctors struggled to understand what was happening, the unidentified virus raced ahead. In 1982 and 1983, the infection rate within San Francisco's gay population was increasing at an astonishing 18 percent per year.

Since those first puzzling cases, at least 18,000 people in San Francisco have died of the disease — six times the estimated toll of the earthquake and fire 100 years ago.

Like most natural catastrophes, AIDS brought out the best and worst of human nature.

"I saw incredible heroism," said Dr. Marcus Conant, a San Francisco dermatologist who encountered some of the earliest Kaposi's sarcoma cases. " I saw hundreds of gay men who stayed with their partners and watched their loved ones die horribly, knowing they faced the same death in a matter of months."

But Conant also encountered ugliness within his own profession, in his own city. "There were a lot of doctors who did not want 'those kind of patients' in their waiting rooms," he said.

A disease that first emerged among marginalized groups — homosexual men, prostitutes and injection-drug users — AIDS exploited social stigma wherever it emerged. Instead of sympathy, AIDS often aroused contempt; instead of compassionate care, it encouraged fear and neglect.

"This is the most political disease I have ever seen," said Dr. Mervyn Silverman, who was director of the San Francisco health department when AIDS emerged in 1981. The city's signature encounter with AIDS in the 1980s would be replayed elsewhere, again and again, as the virus spread around the globe.

"It is deja vu every time it hits a new country," said Dr. Anthony Fauci, director of the National Institutes of Allergy and Infectious Diseases. "First it is denial: 'Nothing is happening.' Then it's 'someone else's problem.' Then it is, 'Oh my God, help us " Today, entire countries in southern Africa are facing infection rates like those endured in San Francisco's Castro neighborhood. In Botswana and Swaziland, at least a quarter of adults are living with HIV.

It took the medical world an even longer time to wake up to AIDS in Africa, where the epidemic had been smoldering for decades. New York AIDS researcher Dr. David Ho would eventually find HIV in a sample of blood from a patient in 1959 in what was then called the Belgian Congo.

European researchers had clues of the disease during the 1970s in a spate of unexplained illnesses among Africans living in Europe.

In October 1983, Dr. Peter Piot, a Belgian tropical-disease specialist who had seen some of those early European cases, led a team of researchers to the Congolese capital, Kinshasa. At the Mamma Yemo Hospital, he saw wards packed with emaciated, dying women.

"I knew this was really bad news," he said. "It looked like AIDS. We had something heterosexual going on there."

A heterosexual AIDS epidemic was, in fact, exploding in Africa. It followed soldiers in the bloody conflicts of the region, and along the trucking routes, where prostitutes serviced long-distance haulers. It spread to remote mining camps and squalid urban slums — where male laborers from rural villages worked for months, had sex with infected prostitutes and girlfriends, and then returned home to their wives.

When apartheid fell in South Africa in 1994, the previously isolated nation opened its borders to the rest of Africa, and AIDS walked in, too. Last year, 5.5 million South Africans — including 1 in 5 adults — were believed to be HIVpositive.

Piot eventually would be named executive director of UNAIDS. The agency estimates today that there are 24.5 million people living with HIV in sub- Saharan Africa. In 2005, the latest year for which statistics are available, the region logged 2.7 million new infections, and 2 million men, women and children died there of AIDS.

While AIDS roared unfettered through Africa, strategies to combat the pestilence were evolving in the United States.

A new HIV test protected the nation's blood supply. San Francisco's gay men dramatically altered their sexual behavior. They used condoms, reduced their number of sex partners and avoided the most dangerous practices such as unprotected receptive anal intercourse.

Infection rates plummeted. A grassroots network of volunteer organizations melded with city and university clinics to provide the sick and dying with care. This "San Francisco model" was duplicated across the country and around the world.

Epidemiologists experimented with needle-exchange programs to protect injection-drug users. Activists battled for the rights of the infected, for government aid and for a cure.

"AIDS has been a crucible that tested everybody," said Martin Delaney, a business consultant who founded San Francisco's Project Inform in 1985. "Out of that furnace came a new model of medical care and for funding research for the development of drugs."

Still, the virus continued to race ahead of its pursuers. AZT, the first AIDS antiviral, was approved by the Food and Drug Administration in 1987. But doctors soon learned that the virus could quickly develop resistance to it.

Activists pushed the FDA for speedier approval of experimental medicines. With each new drug, patients bought time for the day when something that really worked might come along. That day came in the summer of 1996.

At the 11th International AIDS Conference in Vancouver, British Columbia, scientists delivered the news that three-drug combinations of newly developed antiviral drugs — particularly those using a new class called protease inhibitors — could tame the relentless killer. Death rates in Western nations that could afford the medicines soon fell by more than half.

"We'd literally see people recover miraculously with these rugs," said Dr. Paul Volberding, who ran the renowned AIDS program at San Francisco General Hospital.

At the time, the new triple-drug regimes were called "cocktails." Today, the common word is an acronym — HAART — for highly active antiretroviral therapy. There are 27 distinct antiviral drugs or combinations sold in the United States today.

For wealthy Western countries, HAART transformed the epidemic.

"I'll probably die from a heart attack or any of the various things that run in my family," said Bob Katz, 55, a real estate appraiser in San Francisco who has been infected with HIV for 25 years.

Yet early hope that HAART could eradicate the virus was misplaced. Patients still developed drug resistance, and latent pools of infected cells allow HIV to roar back when medicines are stopped.

Side effects such as lipodystrophy — the destruction of fat tissue in the face and arms — have created a new face of AIDS: the hollowed cheeks of many patients on HAART. There are lingering fears that the long-term price of AIDS drugs may be cancer.

AIDS drug cocktails were nevertheless a reprieve for thousands and have transformed HIV in developed nations from a death sentence into a chronic medical condition.

Ross Woodall's life was saved by the drugs. In 1987, his doctor gave him six months to live. The former travel agency vice president watched his friends die by the dozens, but he weathered bouts of illness from bugs that exploited his ruined immune system.

He eventually lost 95 pounds. He burned through every antiviral medicine that came on the market. In 1998, the combination therapy turned his health around. But side effects from years of antiviral medications have drained the fat from his face and limbs, and he is legally blind from an AIDSrelated viral infection.

At the age of 53, Woodall remains upbeat. He works part time as a travel agent and volunteers for AIDS prevention and care programs.

"I've been to hell and back," he said. "If I can keep someone else from going there, I'd like to do that."

Although modern medicine in the United States has caught up with HIV, the virus maintains its edge in much of the rest of the world because the drugs that saved lives here remain out of reach for the overwhelming majority of people living with AIDS. They are just too expensive. Yet there are signs of hope.

Driven by political activists demanding drugs for the poor, and by Indian pharmaceutical companies that could make the new pills for less than a dollar a day, a global movement for universal treatment of HIV took wing in 2000. Generic drugmakers could copy Western AIDS medicines without having to recoup research, development and marketing costs. They could sidestep Western patent law. They put AIDS drugs within reach, if the West would only subsidize the cost. Politicians took note.

Since it was founded in 2002, the nonprofit, U.N.-inspired organization Global Fund to Fight AIDS, Tuberculosis and Malaria has provided $2 billion in assistance, and in 2003 President Bush began his own $15 billion overseas AIDS-relief effort.

Today, 1 million of the 6 million AIDS patients in the developing world who need antiviral drugs are taking them. The push for treatment has created for the first time an incentive for Africans to be tested for the illness. Studies show that once people know they are HIV-positive, they are less likely to spread the virus.

"For the first time in a quarter-century," said Piot, the UNAIDS executive director, "we are in a position to get ahead of this epidemic. But it is going to require an enormous and sustained effort."

Despite these signs, there is no vaccine and no cure. Safer-sex behaviors have proved difficult to sustain. Ominously, in the United States, the disease is burrowing into impoverished neighborhoods and disproportionately affecting blacks. The CDC estimates that 40,000 new infections occur in the United States each year, and increasingly they are occurring among blacks and women.

Today, the harder edges of the local AIDS epidemic can be found in San Francisco's homeless population. "It's still a mortal illness in the Tenderloin," said Alexandra Monk, project coordinator for REACH — Research into Access to Care for the Homeless. "We've lost over 100 in the last four years."

DeShawn Patton, 41, said she has been HIV-positive for two decades. She lives in a small and crowded hotel room off O'Farrell Street with her boyfriend of six years, who is HIV-positive and has cancer.

Patton was born male, and grew up a gay teenager. Today, she lives her life fully as a woman. "The hardest thing for my family is not that I have AIDS but accepting me as transgender," she said.

Patton's health has been slipping. Her T-cell count — a measure of infection-fighting white blood cells, has dipped to 119 — a healthy number is 600 or more. She had a bout with pneumonia that sent her to San Francisco General Hospital, but she bounced back, as she has all her life.

Around her, HIV still has a grip on the community in ways once seen in the 1980s in the upscale Castro, just a few miles up Market Street.

In the Tenderloin, sickness and death rates are higher because of the nature of life on the street, of substance abuse, poor diet, hepatitis C and untreated mental illness. Blood tests of the poor and homeless in the Tenderloin show that at least 11 percent of that population is infected with HIV — a higher rate than in Uganda, where the same UCSF researchers run an AIDS treatment clinic.

Dr. Brad Hare, medical director of the Positive Health Program at San Francisco General Hospital, is Patton's physician. When the AIDS epidemic was first described 25 years ago, Hare, 36, was in elementary school.

Hare was a medical student at Duke when he saw his first AIDS patient, a New York artist who had moved back to North Carolina to die. When the patient recovered under treatment with the new AIDS drugs, Hare was hooked. "That's why I went into medicine," he said.

Half the patients he treats at San Francisco General today are black or Latino. They are often poor, living in ramshackle housing or in the streets, and they are very sick.

"We still see people come into our hospital for their first test for HIV, and they have pneumocystis pneumonia, cryptococcal meningitis and 10 Tcells," Hare said. "We still see people die of classic, old-fashioned AIDS."

Today and Monday, The Chronicle examines the AIDS epidemic 25 years after it was first recognized in the United States.

AN INTERACTIVE TIMELINE

A highlight of medical, political and local events over 25 years, and the people who focused attention on the AIDS crisis.

A GLOBAL MAP

A comparative look at AIDS around the world.

A PODCAST

A retrospective on the late Randy Shilts, Chronicle reporter and author of the landmark "And the Band Played On: Politics, People and the AIDS Epidemic."

A VIDEO REPORT

A patient undergoes a new procedure that helps erase the facial wasting side effects of AIDS drug therapy, and meet three physicians who have been on the front lines of AIDS research since 1981.

Coming this week

MONDAY: AIDS hits African Americans hard.

LATER THIS WEEK IN DATEBOOK: AIDS and Bay Area theater. The many local artists lost to AIDS.

Commemorations

Events scheduled today to commemorate the anniversary of the discovery of AIDS.

Daly City: Opening ceremony of the AIDS/Lifecycle at the Cow Palace at 6 a.m. Nearly 2,000 cyclists plan to leave the arena with red helmet covers emblazoned with "25," signifying the 25th anniversary of the start of the epidemic.

San Francisco: AIDS Candlelight March participants will gather at Harvey Milk Plaza at Market and Castro streets at 7:30 p.m. to begin a walk down Castro to a ceremony at 18th Street.

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